This needs to spread like wildfire: A path forward for young carers in Ontario

Those are Emily’s words, but they may as well have been spoken by any of the 20 other young carers we had in the room at our recent Young Carers Forum, the first time in Ontario that young carers, researchers and policy makers were brought together to start planning a way forward for young carers.

As the caregiver conversation gains momentum in Ontario, it’s important for us to not allow our province’s half a million young carers to be left behind. Too often, this sub-population of family caregivers – which has its own issues and needs related to schooling and age and just being a kid – is forgotten.

“No one should ever have to make the choice between their family and their future,” said another young carer at the forum. He’s right—we’re asking too much of young carers without giving them anything in return.

The Forum was an opportunity to start changing that.

We wanted to hear directly from young carers, and we most certainly did. In fact, I think we all learned something valuable that day: Don’t underestimate young carers because of their age. These children and youth are wise beyond their years, and they will be the change they want to see in the world. We just need to listen.

And we did, and it was a privilege to hear these mature and articulate young carers tell their stories, and it was a privilege to hear their ideas for change. Theirs are stories that need to be told, and theirs are ideas that need to be implemented.

We can’t be cynical about this. We need to start with the knowledge that we weren’t wasting our time at the Forum. There are too many people listening—Ontario’s Premier Kathleen Wynne told us as much in a welcome video and Ontario’s Patient Ombudsman Christine Elliott attended the entire Forum, and even spent her lunch hour with the 20 young carers, hearing their stories in more detail. There are too many young carers who shared their experiences and who demand to be heard.

It’s time for change.

But what should that change look like? Here’s what we heard from the young carers at the forum:

We need to build awareness that young carers are everywhere. They should be recognized and valued. This is where we need to start.

We need more supports for young carers in the worlds of education, health care and social services, and they need to be available, reliable and consistent. In the words of young carer Emily, “don’t make me go find them.”

We need to create safe places for young carers, but we need to think about how to create these places and where. We need to realize we can’t just wave a magic wand and make something “safe.”

We need more programs for young carers. We heard from some of the programs that already exist in Ontario at the forum, and they’re mostly organizations with small budgets and large results.

Young carers need more resources. And by that, I mean money. Health care spending is directed at current priorities. We need to all work together to make young carers a provincial and national priority.

Collaboration is crucial here—young carer issues cross a variety of sectors: education, health care, social services, community care. We need an integrated approach. This will be a challenge because that’s not how government is used to functioning.

How do we get all this done? For me, that means listening to the words of 14-year old Abbigail, and her advice to young carers:

Don’t be afraid of telling people about your life

Talk to people you trust

Do things you normally enjoy to keep your self-esteem up

Stay true to yourself

Don’t let others bring you down

Let’s start there, and let’s keep moving this forward. We have a job to do to make young carers a priority now – and we need to grab some attention. So let’s go. This is just the beginning.

To quote a speaker at the forum: “This needs to spread like wildfire.”

Stephane is a young caregiver who assists with caring for his younger brother. Don has been caring for his wife since her diagnosis with early onset Alzheimer’s 5 years ago.
Hear from Stephane & Don on what their #caregiving experiences have been like: bit.ly/2VuxJCKpic.twitter.com/FfZTG9IqkE

Have you registered for our upcoming webinar on Including Caregiver ID initiatives as part of Family Presence and Open Visiting Policies in Ontario?
The webinar takes place on June 6th from 12:30-1:30 p.m. Register here: bit.ly/2Wuto3qpic.twitter.com/UTo09kDe1y

While 64% of #caregivers surveyed said they were happy to step in and provide care, 18% felt intimidated by what was expected of them.
Learn more about how caregivers feel about caregiving in our Spotlight on Ontario's Caregivers report: bit.ly/2TrwMe8pic.twitter.com/dl3dwlX8MQ